I will be seeing my neurologist on February 3rd and will speak to him about my MG drug choices. I used the new schedule Thursday, and I think I had good results. I wont know about any improvement on sleep for one or two days. Although I started the day with labored speech, which got worse a few hours into my taxi-driving shift, by 10:00 p.m. my symptoms were noticeably less sever. By the end of the shift at 3:00 a.m. I was very strong. This was the first time since I was diagnose in November 2013 that I was stronger at the end of the shift than I was at the beginning. I wonder if it is too early to declare that I am cured.

Thanks to all for the valuable information above.

-Mark-

The only way to communicate with my doctors between visits is to send them faxes. Usually they have their medical assistants call back by phone. I sent my neurologist a fax with the above information, and his medical assistant responded that the change in dose timing was OK. The medical assistant also said that if I was having trouble sleeping the doctor would prescribe a sleeping pill. I told her that I do not want to start taking sleeping pills, but would speak to him further about other options to the Prednisone when I see him on February the 3rd.

Note: My doctors should be well aware of my sleeping schedule. In addition to informing them of my reversed schedule during appointments, the fax I sent about having trouble sleeping clearly stated my sleeping habits. Yet they called two hours after I fell asleep to address this issue. I usually turn off my phone during the day, but forgot to do it this morning. When I saw the doctor's office number, I decided to answer it in case it was important. I should have just let it go to voice mail and stayed sleeping. I hope I can get back to sleep.

-Mark-

Hi Mark -

It is smart of you to ask all the right questions.

The steroid sparing immunosuppressants, in the opinion of my dr, are typically considered safer than long term, high does steroids for a variety of reasons.
One reason to consider: Since the Pred will replace the body's natural production of cortisol your adrenal glands can become "lazy" after long term use.

Here's the hiccup: when you try to taper, in some instances and depending on the dose and duration, the glands don't want to turn back on. Then you can become "steroid dependent" for life.

You may already know all this so forgive me, if so, but I didn't fully appreciate this until well into my course at which point I sought the guidance of my endo. The trick when tapering is go slow - painfully slow - so the adrenals "wake back up".

In my autoimmune travels (ie waiting rooms etc) I have met a number of patients where this was the case (some being treated for Lupus, MG, Crohns etc) and the overwhelming sentiment was that they wished their drs had properly warned them of not only this but of other side effects.

The other s/e I experienced were:

1. Bone Loss and associated stress fractures (after only a short time)
and enamel loss. My teeth thinned.
2. Refractory thrush (meaning it was VERY VERY painful in my mouth/throat and would not clear until after I was off the pred despite heavy duty antifungals)
3. Multiple skin infections
4. The fattest face in the world (I refuse to call it moon face bc the moon is beautiful and this insane swelling was not). Unlike most ppl who fully reverse, I still am dealing with it 6 months later. It is much better but still not my face.
5. Damage to my stomach lining. Long term pred can cause ulcers and other lining issues. I am just going through it now. It has been painful.
6. Joint problems

These all in their own right have diminished my QOL and yet I have heard far worse horror stories. Again, I don't mean to alarm you but I do wish someone had laid this out for me. I would still have tried the pred but I would have taken protective measures like:

1. a low sodium diet
2. Use vit d and calcium
3. Use antacids to protect my stomach etc.


I will write more later on IVIG/other treatment options. My eyes are tired and I know if anyone gets that it's this group

Last thought: IVIG is typically offered last bc it is the most $$$$.

Don't forget diabetes. That's usually the first thing to show up. I had to take insulin shots when I was on it, when I usually control my sugar with diet.
Mpage, be careful of sleeping meds. They can further weaken your muscles, especially those needed for breathing.

We often pickup prescriptions at Walgreen's and CVS pharmacies in our taxicabs and deliver them to various rest homes around the South Bay. This gave me the opportunity to speak to several different pharmacists in the past two day. All said the same. Prednisone is the least invasive of the others mentioned. They said that this is the reason that the doctors start with it.

I looked at the side effects of the others options you mentioned, and they did not give me a warm and fuzzy feeling.

I am very happy to learning about the consequences of the long-term Prednisone use that you mentioned in your post. I get the felling that I will not have much of a choice, unless there is a compelling reason to stop Prednisone. I am glade to know about these consequences, so that I can take preventive measure to mitigate the effects right from he start. I've only been on it for about 10 days.

I wonder if you can take it for awhile, and then stop or taper off for a period, and see if continual use is necessary. In December the Mestinon appeared to be enough. Is it possible to take it only when one needs it for symptoms? I am most concerned by the brittle bones and the lazy immune system.

-Mark-

Several things that concern me:

1. Sleeping pills. Ambien has recently added a specific warning against using it with MG. It can suppress respiration and kill you. I had personal experience with ambien. I was using it before my diagnosis and before the new warning. I went absolutely crazy. I had memory loss. I had weird, illogical behavior. I was diagnosed with "dissociative disorder" because I obviously had two separate people hanging out in my brain and they failed to communicate with each other. Bat sh** crazy. I was most likely dying of oxygen depravation. I quit taking the drug and I am much better.

2. Prednisone. If you have only been taking it short term, you can quit taking it without withdrawals. If you have taken it long term, it is not so simple. The drug is not psychologically addicting, but it suppresses your own production of similar stuff, (cortisol, adrenocorticotropic hormone, aldosterone) and you have to have that stuff to live. So after taking prednisone for several months, you have to wean off of it over a period of several months.

I am a veterinarian, and we give prednisone on an every other day basis to dogs because it greatly decreases the side effects and physiological addiction issues.

The kicker with this drug is that physical addiction without any psychological addiction is very dangerous. Your brain doesn't care whether you take it but your body really, really does.

(I know it sound confusing that I said earlier that I am a college teacher, and I am also a veterinarian. I am both.)

Celeste,

I will look into this when I get off work tonight. I was prescribed 50 MB Trazodone tablets. Trazodone is described as an "oral antidepressant (trade name Desyrel) that is a nontricyclic drug used as a sedative." Took one when I went to bed around 6:00 a.m. and had a good "days" sleep for a change. I even woke up earlier than normal, feeling no residual grogginess. But this is only after one day.

To be safe, do you think I should try it out on my cats first? No that won't work. They are already crazy. I would not be able to tell if it was the pill, or their normal state of behavior.

Here is a link to some photos of my cats, Boris and Natasha, when they were younger and less crazy:

http://www.losgatosphoto.com/gallery/Album10.htm

Here is Natasha inspecting my purchase decisions from Safeway:

http://www.losgatosphoto.com/gallery/Album9.htm

Take care,

-Mark-

I looked up trazodone and they don't list any problems with MG. If it causes a problem, nobody knows about it yet. Just keep a watch on how you are doing.

Nice cats.

Hi mpage,
My advice:
-Prednisone should be taken once a day, about 12 to 14 hrs before bedtime and always with a meal,
-timespan should be taken about one hour before going to bed. If you want to take it twice a day, space the two doses by 12 hours and never on an empty stomach.
Good luck!
Maurice.